settling back in

We are home and loving it, the boys are right back to where they left off....inseparable and playing up a storm. Alex is back to quietly overseeing them and loving on us.

It feels safe and comforting to be home, I have realized as Kyle has gotten sicker over the last year that my safe zone seems to be home, I find when I'm away I crave it. Everything I could ever need for him in an emergency is here....his little body can revolt on us at any given time and it can be nerve racking to be away from that, even when we were in patient in a hospital I was nervous. Kyle's team at MMC from his dr's to his nurses know him...they know us. I found myself missing that so much this week. You form a trust, a bond with people when you work this closely with them...its hard to re create that.

I've wanted to blog for over a week about the loads of thanks I need to give....that blog is still rattling around in my head so forgive me I know I still owe some pretty serious thank you's...I promise they are coming.

A few of you have asked if we got a "diagnosis" for Kyle while we were in Columbus. We did not....what we got was proof of what we have been seeing for a long time, Kyle's motility, while still slightly there is bad. Do we want a diagnosis....sure we do....but it won't change the way we treat him right now, we are still in crisis mode....he is still TPN dependant and will be for a while. We won't know if he can get off of TPN until we do the j tube surgery. At this point we have no reason to believe it won't work. Until a dr says it's not working anymore (his motility) we will keep thinking positive and moving ahead.

People have been incredibly kind with their words of support to both Mark and I...I thank you for that. I won't speak for Mark....I only speak for myself when I say this... having a chronically ill child for over 5 years does take a toll on you...I wish I could say that for the last 5 years I've been proud of how I've handled every situation that has been thrown at us. If you had told me that at the age of 27 I would have a preemie, watch him almost be taken from me numerous times, live my life in a hospital, watch my sweet baby have over 13 serious surgeries and come out unscathed I would have laughed at you. Again I'm not perfect...there are many things I wish I could change, take back, do over....I can't do that. What I am trying to do is be the best person I can be...which in turn I think helps me be a better Mom, wife, friend and daughter. Where is this coming from your probably asking.....the last few weeks have been tough, I have questioned alot, worried a ton, and felt like life was spinning out of control.
I have looked back on things and realized one thing...I'm not perfect, I make mistakes, but I love my kids more than anything.....whatever happens with Kyle he will always know that we love him and are proud of him. He doesn't care that I'm not perfect, he loves me because I'm his Mom and he knows I will move mountains to get him anything he needs. He will never be alone in any of this.

OXO
Kate